Wednesday, February 29, 2012

Don't forget the pack and play.

Ah, darn.

We always forget something. This time, a place for the child to sleep. This will be a looong night, because he's literally never slept in anything besides a crib or pack and play. We've rigged a sleeper sofa against a wall, and put a cushion on the end of the bed so he can't slide down. i'll "sleep" on the other side so he doesn't roll out. Pic to come.

His mri went super fantastically today. Only a half hour behind schedule (which is pretty good i've learned), and he did great, and came out of anesthesia really easy. This is SOOOOO not the normal case. We do the "he's a total grouch, needs held, needs 02, call us right away" speech, but not so this time. He was up immediately, before he even got to recovery. He was happy in about 10 minutes even giving the tech a high five on the way out.

When we got to the hotel, he was literally bouncing up and down. Wild! We went out for dinner where the funniest, most embarrasing thing that's happened to me in a LONG while happened.. They put his high chair at the end of the table in a very narrow aisle (apparently that's the only type they have at applebees!) The nice waiter man was facing the other table, getting their order. When i loo over, Micah's got his hand on the waiter's behind. Right, square on his behind. WHOA! Oh man, i laughed til i cried. i was probably 7 shades of red. The waiter didn't miss a beat, and never mentioned it, probably because i was already dying laughing.

Life's never dull, is it?

Tomorrow we head to the OR, for... we're not sure. The plan is to scope him and have the oral surgeon examine him, and pending the mri, do some sclero. if no sclero, we shouldn't have to stay. if sclero, we'll be there overnight. So strange not to have a plan, but there's no other way!

Now, if only Micah would go to sleep. That anesthesia was too good to him, apparently!

Tuesday, February 28, 2012

Micah's to do list this week

1) Orthotics Appt- Curious George SMO's it is.
2) Call Guest services @ hospital to reserve discounted hotel (for one night, or two? ugh, no way to tell, go w/ one, it's a lesson i've learned the hard way)
3) Miss call from Radiology Dept, return call, spend ten or 15 minutes reviewing medical history (which for some reason was missing almost everything... Even though it happened there!)
4) Start to think about packing. Throw a handful of clothes in so you can feel better about yourself. Where's that packing list again?
5) Email ENT to see if he's gotten the swallow study write up.
6) Reply to ENT who hasn't gotten it, only to find out their fax has changed.

1) Miss call from surgery schedulers.
2) Try to return call, to no avail. (This is always a terrible ordeal, never miss those calls.)
3) Get text from Travis saying they called him instead (yay!)
4) Go to hospital for speech therapy.
5) Before ST, stop at neuro floor 1 to try to schedule appt....
6) Get sent to neuro floor 2 only to find out a letter from the insurance company demanding he has a consult is not good enough to get it scheduled. Have to get a referral from Ped. Decide to shelve this for the day, i've had enough.
7) Give ST the correct fax number, and pray (this is attempt number 3).
8) Email ENT to be watching for it
9) Thank God Micah's napping today.
10) Avoid calling medical equip provider, i'm not up for ten minutes of trying to figure out why i'm getting the wrong stuff, again.

Now, don't be jealous.

Monday, February 27, 2012

SMO no!

Well, at least if we have to add someone else to the list, he's really, really nice. Got to pick the design of his SMO, so we went with Curious George. :) Apparently i'm slightly delusional, his feet are pretty bad. His development isn't too far off, but if we don't correct it he would probably end up w/ knee/hip/back problems. And he doesn't have anything on his side for back problems. Bummer. The hope is this helps his foot stay stable and he'll feel more confident. We'll get them in a couple weeks, probably.

Thursday, February 23, 2012

The pace

The pace is picking up around here lately. Can't say i'm ever a fan of that, really. We're adding the following between now and mid-March.
1) Orthotics eval for SMO's (the what for the what? these: SMO's He may or may not need them, it's been up in the air for quite some time, but always got on the back burner due to... Micah being Micah :) i finally decided to get him evaluated so i can stop feeling guilty about it. The goal would be to stabilize his foot so he can do some of the things that he's been behind on from a gross motor perspective. Unfortunately, they're a pain in the toosh, and they have to wear them all the time w/ socks and shoes. And if you've met me, you'll guess socks and shoes aren't a priority around here. Lets hope he doesn't need them.

2) Neurology consult- it's a load of poo, in my opinion. We got a letter from insurance saying he needed a consult. They won't tell me why, but we have to do it. My guess is they're trying to disqualify him from something, i'm afraid to guess what.

3) A new speech therapist- to compliment our current one. Our current will have him once a week for feeding, and the new one will have him 1x week for communication. Can't say i'm thrilled, but whatever. They're trying to push an AAC (see here)device, saying his dexterity isn't good enough for signing and that signing isn't functional for the long term. i've been fighting this fight for about a year now... Blah, blah blah. i can see the merits of both, but i'm not giving up signing anytime soon.

4) A new doc/surgeon: He's going to hopefully enlighten us on the many issues in our little man's mouth. That's part of the Cincy plan for next week

5) The school system. There's not enough time for this one now, maybe ever, LOL.

Micah did well w/ feeding therapy today, he ate an ounce and a half! That's the most he's ate since summer, and maybe ever. Wasn't so cool when he held the last two bites of yogurt in his mouth for an hour or two, then almost threw up everywhere, because... EWW! Overall, since his video swallow study, he's been a different man, all because we found out what he needed.

Phew. i'm tired even typing this out. So, if it seems we've fallen off the face of the earth, it's probably because we have.

What on earth?

So, Micah (RANDOMLY) started putting things in his mouth. And yesterday, he ate 7 of those "puffs". That's officially 6 more than he's ever ate in a day (and he's eating them whole, as opposed to in quarters before). He pops them in his mouth like it's no big thing.

Who is this boy and what did they do with my son?
And now, i'm kissing a giraffe foot... (don't worry, that's normal around here).

Monday, February 20, 2012

A new study

There's always hope for a better treatment! And sometimes, they might come from unusual places. This is really the only thing out there beyond the rapamycin. He's not eligible for the trial though. (trouble w/ font, sorry)
Viagra may help kids with rare, disfiguring disease, study shows

By ERIN ALLDAY, San Francisco Chronicle

Stanford researchers may have discovered a drug for a rare and often untreatable disease that leaves children with massive, and sometimes deadly, growths on their faces, necks and other parts of their bodies.

Here's the twist: The drug is Viagra.

In very early reports, sildenafil -- best known under the brand name Viagra -- reduced the size of growths in three children with lymphatic malformation, a disease that causes spongy cysts to swell and clog up the lymphatic system.

It's too soon to say how effective Viagra could be in treating most cases of lymphatic malformation, but Stanford researchers are starting a clinical trial and are currently seeking patients to test the drug.

"Some of these kids have no other hope," said Dr. Al Lane, a pediatric dermatologist at Packard Children's Hospital at Stanford. "The first child we treated, the malformation was so big and she was in such bad shape that there was nothing we could do for her. We gave her the sildenafil, and we were blown away."

Lane stumbled upon Viagra as a possible treatment for that child, a 5-month-old girl, by accident.

Sildenafil was first developed in the early 1990s to treat high blood pressure, but early clinical trials found that it was more useful in treating erectile dysfunction. Today, sildenafil is sold primarily under the name Viagra for erectile dysfunction, although it's also used under the name Revatio to treat a rare form of high blood pressure involving the lungs.

About a year ago, Lane examined the infant girl, who had severe lymphatic malformation with growths that had swelled up in her chest and wrapped around her aorta. The pressure caused high blood pressure and, eventually, heart failure, so Lane gave her sildenafil.

The drug helped her heart problems but Lane also noticed a massive reduction in the lymphatic malformation. Intrigued, he tried the drug on two other patients with lymphatic malformation and noticed similar results.

Lane wrote up his findings in a short letter published in the New England Journal of Medicine last month. Since then, a fourth patient has been treated and also saw some improvement. In all four cases, the growths started to come back when the children were taken off sildenafil, and the parents opted to resume drug treatment.

Lymphatic malformation affects the lymphatic system, which is part of the circulatory system. The lymphatic system removes excess fluid from tissues and organs, and transports white blood cells. In patients with lymphatic malformation, the vessels that make up the system become clogged, and fluid builds up and creates large cysts or masses of sponge like tissue.

Other physicians who treat lymphatic malformation say Lane's work is intriguing, but not yet cause for major celebration. With only four patients treated so far, it's too early to say just how effective sildenafil is, said Dr. Jonathan Perkins, an expert in vascular anomalies who treats children with lymphatic malformation at Seattle Children's Hospital.

"Honestly, I don't know what to make of this just yet," Perkins said. "Is the drug safe? What does Viagra do to little kids? This is very interesting, and it needs further study."

Erin Allday is a San Francisco Chronicle staff writer. eallday(at) For more stories visit

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Saturday, February 18, 2012

Winter Fun

Very intently decorating cookies for Valentines Day present

He's his mothers child, he doesn't care for finger painting, so we use a brush :)

This has been a habit of his since he was a tiny baby... except now, he's not so tiny... doesn't stop him!

He's doing really well, if you can't tell. Healthy, and we still have about a week and a half til we have to go to Cincy.

Thursday, February 9, 2012

Feeding Tube Awareness- Part 3

The current tubie- (and his "belly button" -
This is a g-tube (short for gastronomy tube). Specifically, it's a mic-key button. Technically, between the NG and this tube, he had a PEG tube, but that's often a temporary tube right after the tube is placed. The PEG is probably 4-6" long, and is a soft silicone tube that hangs from the body. Adults sometimes have PEG's, but most children have "buttons", because they're less likely to be snagged.
This picture was him sleeping, i couldn't get one of him standing still (a surprise, of course).

He's connected to h
is overnight feeding from about 8:30-5:30. it runs on a little pump at a rate of about an 1.5 oz/hour. The body normally slows down the gut at night, so it can rest. Little Micah doesn't have that luxury. We run it pretty slow for that reason.

One th
ing i haven't addressed is the "why" of the tube, other than initially (aspiration). He outgrew his aspiration at about 6 months. But, believe it or not, he lost the innate feeding reflexes, not to mention the desire. At about 6 mo, he was cleared for baby food consistency, which is less likely to be aspirated. At 11 months or so, he was cleared for liquid. The long and the short of it is that he's not that interested. His stomach is so small, and his tube feedings so frequent that he has very little idea of hunger (minus the pre-surgery stuff). He also has issues moving food around in his mouth, probably a problem related to the lymphatic malformation or the surgeries to treat it. On top of that, his mouth doesn't open much. Again, probably the LM, surgery, and the fact he's never had to use it. Here's an example of his dilemma. We'll call it, Micah vs. the Dum Dum.

Hopefully tomorrow will be part 4.. We'll see it i get to it... Might be a little late. Hoping to add a little tubie humor, and a little of tubie ettiquette.

Wednesday, February 8, 2012

Feeding Tube Awareness- Micah's day

Micah has a bit of a rigorous tube feeding schedule (although not what it used to be, at all! Phew!) His stomach for whatever reason is unusually small (could be not having any food for days after birth, his nissen fundo surgery, ???) He gets 4 "boluses" (a large quantity over not much time) and he gets continuously fed overnight. His boluses are given to him about 1/3 or 1/4 at a time, at 15 minute intervals (so his first feeding is given at 8:30, 8:45 and 9:00, for example)
His tubie schedule:
8:30-9:30- 4.5 oz food, 1 oz H20,
11:30-12:30- 6 oz food, 1 oz H20
2:30-3:15- 4.5 oz food, 1 oz H20
5:30-6:30- 6 oz food, 1 oz H20
8:00- Meds and 1 oz H20
8:30pm-5:30 am, 13 oz food, 3 oz H20.

Overnight (and sometimes during the day) his food runs on a pump that gives it to him at a steady rate. He has significant reflux issues which are currently controlled by meds, and one of his biggest vomiting triggers is too much at a time. We've made significant gains in the last few months (one happy mom!).

He currently gets about 1200 calories a day, and 8 oz of extra water. i never would have thought a 2 1/2 year old would eat that much normally.

Sadly, he normally gets pediasure. it's pretty much crap in a can, but it has a lot of advantages (safety, consistency of calories, portability, ease of feeding). Sometimes we do a blenderized diet, where we blend whole foods or baby foods and put it through his tube. My own OCDish tendencies muddle that process, trying to find perfect combo's of foods to get him what he needs. For example (Here's one of many pages of my calculations). He needs 30 calories per ounce of food, which is a little outrageous, really. The only food i can compare it to is full fat full sugar pudding. Ew. On top of that, you have to at least be somewhat close on fat and protein as well.